Who We Are - Steve & Fennario...

Updated: Mar 19

I mostly write in, "we," in regards to both of us, even for my races.

Being reunited after flying to Chicago for a weekend in June of 2019...

I was supposed to die the day I was born. I was born six weeks early, and a lining in my lungs wasn't fully developed. I held on for 72 hours until I got in the clear. Apparently I amazed doctors with my will to live...so the story goes.

Outside of severe migraines for about a decade, that I got sorted when red meat was phased outta my life by accident when I was 19, and some lazy eye issues when I was a little kid, I was a pretty strong and goin' for it kinda guy. Everything changed in 1993 when I was 19 years old.

The very short version...

On September 8th, I got a cold, and by the end of the month, it had turned into a viral flu. By mid-November, I was throwing up for the first time since I was a little kid, that wasn't from partying (I'm honest about myself.), and something happened in the top third of my spine, as well as the left side of my pelvis. By Christmas time I could barely walk or move.

In mid-January, 1994, I was told to get used it because there's no cure and I am like that for life. It was pretty profound because the pain in my entire body was agonizing like nothing I could have possibly imagined, and I'd only turned 20 years old at the start of December.

The initial diagnosis was Reiter's Syndrome. A rare and specific form of arthritis that affects every joint in my body, even my jaw and in my skull. My life was now different.

Somewhere around 1999-2000 I developed some kind of mysterious stomach issue that mirrors Crohn's Disease, but isn't that. After tons tests, scopes, doctors, no one has figured it out, and I navigate through it avoiding certain foods.

In late 2001, I then developed my second form of arthritis, Ankylosing Spondylitis, which is where all my tendons and ligaments are calcifying and hardening. Gawd damned...if the Reiter's Syndrome wasn't enough!!

I also have osteoporosis, fusion in my lower spine and pelvis, as well as my first rib is fused to my spine by my neck. In 2016 I developed some rare thing of excess fluid on my brain, that makes my face and skull go numb.

There's other stuff too, but at this point, who cares. Between allopathic, natural and structural medicine over the past 28 1/2 years, I've seen closer to 400 than 300 doctors, healers, technicians, etc. Nothing on me doesn't hurt...horribly! Every joint, all my tendons and ligaments are in terrible pain, my muscles feel ripped and torn, my kidneys hurt, my liver hurts, my stomach hurts, and it even hurts for clothes to touch my skin. My head is numb, but luckily that does not effect clarity of thought or motor skills. (That would be a bummer!)

As for my breathing... At times I have gotten shots of pain in my chest that are so bad that my ribs won't let my lungs expand and contract, making it so I can suffocate with my mouth open because my stilled lungs cannot get air in or out. That is gnarly, but thankfully only lasts 12-15 seconds at a time when. When it first happened though, it scared the crap outta me because I felt like I was dying...for real. Thankfully, that hasn't happened for over 15 years, but my lungs still hurt and my breathing is shallow.

I live in a world between asleep and awake. I have only slept one night through since 1993, and that was in January 2001, but I did do a 9 1/2 month stretch in 2011 where I could only sleep about 15 minutes twice a day. "They" say that isn't possible, but I did it, so "they" can suck it. (Giggle.)

I'm so messed up, but I just don't care because at this point, what difference does it make. For years now, when new things happen, I only have one question for doctors...

"Will it kill me, or not?"

That's all I care to know, because I can handle any kind of pain thrown at me. There isn't a place on my body that doesn't hurt from head to toe, inside and out. I have no idea what it's like to not hurt anywhere.

The stories I have about what all of this has done to me are really quite horrific. I even lost about 5 1/2 out of 6 years of my life after getting run down by, an animal on June 30, 2009. I've spent so many years worth of time bed-ridden, that my body has fused into the position of my head being on a pillow, and for years I have not been able to stand up straight...losing 2 inches of height.

I'm a grinder though, and life goes on. Just because my body hurts doesn't mean the world stops spinning, so I gotta keep rolling. My pain isn't even the hard part, it's everything that it has robbed me of, and also the way it has sabotaged my life. I've been days away from homelessness many times, I have been evicted for not being able to get rent together, I've done forced water fasts because I don't have any food, and gone into massive debts at times, even damaging friendships. It's not easy being sick, because like I said, the world doesn't stop spinning because I don't feel well.

I honestly feel like the cockroach you can drop a nuke on and still be standing. I've just been through way too much pain and tragedy, yet I'm still here, and as long as I am, I'm goin' for it.

I was an athlete before this started, and that will never stop. After a horrific year in 2002, I told myself in April of 2003 that I was doing the triathlon that year, despite the fact that I couldn't even swim 5 feet in the pool. I got 'er done though, and went and got myself addicted to the sport. I'll leave all of that for another section as this has gotten long, even though it is the short version of things.

Finishing the Pavilion Lake, BC Triathlon together in 2018 - Photo by Gary Winslow...

As for my Fennario doggie, she had a rough start as a pup, and I got her when she was around 9 weeks old. We are inseparable. She comes everywhere with me. The basic rule is that if she can't come, I'm not goin.'! Here's her story...

"Winning Her Trust & Giving Fennario Her Name."

72 views0 comments